Hi,

I just joined like 20 minutes ago. My name is Ramona and I was recently diagnosed with Peripheral Neuropathy in my left leg. The diagnosis came about when I went to my Neurologist because my left foot was vibrating, just like a cell phone would when it goes off and at first it was only doing it once or twice and I initially thought it was the vibrations of the floor.

Then it started happening everywhere I went and became so constant, it was keeping me awake. I made an appointment with the Neurologist and he did a test on me and said I had Neuropathy and it was significant, all the way up my leg. In fact it's vibrating right now. He prescribed Nortriptyline to take at night and it has helped a lot but I only take it at night cause it makes me sleepy.

Going to the Neurologist with my foot vibrations opened up a whole new can of worms. Let me try and give you my story without making this a novel.

To begin with, more than 10 years ago, I was diagnosed with Cardiomyopathy and congestive heart failure. Then a few years later, I was diagnosed with Ulcerative Colitis. The heart thing was really bad but eventually it became well controlled with medications.

However, the Ulcerative Colitis is a different story. At the time I was diagnosed, I had no medical insurance and couldn't afford the medications after awhile so I stopped taking them. I had flares but they'd go away and one time I went to the doctor with symptoms of diarrhea and he gave me meds and it actually put me into remission until two years later when in late September of 09, it came back and with a vengeance.

I was in bed for over 2 weeks becoming weaker and weaker until I finally went to the doctor and was sent to the emergency room. I was in total kidney failure due to severe dehydration. I was transferred to another hospital where I remained for 3 weeks and undergoing surgery to remove the colon. I was so bad off, I could no longer walk and I was in ICU the first two weeks I was there and had sepsis infection and was near dead when they first brought me in. I had a total of 9 IVs in me at first and gradually got off them altogether.

After that, I was taken to a rehab so I could learn to walk again and regain my strength. It took me 6 months to recover completely but I did. Then 3 years later, December 29th, 2010, I ate something that disagreed with me and became deathly ill. I couldn't eat or drink anything and was vomiting and had diarrhea. Being I had no colon, I got dehydrated within 2 days and went to the hospital by ambulance when I woke to find I couldn't feel anything from the neck down.

When I got to the hospital, I was in total kidney failure again and had a potassium of 9.4 which most don't survive and a very low blood pressure and they called my family and said I might not make it and to come down but after awhile of giving me fluids and medicines, the potassium came down and I was again transferred to the hospital I was in the first time and remained there for 4 days.

Two days out of the hospital for that, I suffered a Grand Mal seizure in Walmart, January 4th, 2011 and was taken to the hospital. They did a cat scan and found nothing and I was referred to a Neurologist and he ordered an MRI and a EEG. The EEG was normal but when they did the MRI, they found I had a brain hemorrhage on the entire right side of my brain and there was so much blood, it pushed my brain to the side. This was March 1st, 2011, nearly two months after the seizure they found this. They would have found it sooner but I had NO symptoms.

I was transferred to a hospital and underwent emergency brain surgery. I recovered from that and Neurologist thinks that's what caused the seizure. Then December 20th 2011, I had another kidney failure but only had to stay overnight that time.

Now I'm up to now. I started having foot vibrations about 4 months ago so I went to the Neurologist and he did a basic test such as running a pin along my leg and foot and tested the reflexes, then ordered bloodwork. This is what sparked a whole new issue. A protein showed up in the blood that was abnormal so he sent me to a Hematologist. This was after he did the test and determined I had Peripheral Neuropathy.

Anyway, the Hematologist ordered a bloodwork panel and a Urinalysis and said he thinks it could be this disease called Amyloidosis. It's a disease that deposits proteins in the tissues that don't belong there and can attack the immune system and take over the tissues. So he wanted to do a bone biopsy too. The first time he tried it, he didn't have a long enough needle.

So he sent me to a Surgeon who performed what is called a fat pad biopsy and made an incision and took tissue samples. Then I went back to the Hematologist and he performed another bone biopsy and luckily this time had the right equipment. Luckily both the fat pad biopsy and the bone biopsy are negative. Now I just have to cope with Peripheral Neuropathy. *WHEW*

You've certainly been through a lot! Nice to meet you!

NaughtyLilAngel48,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Man have you been trough a lot of medical things in your life. I have listed here our forum on Peripheral Neuropathy. There you will find a large group of friends there to help you.

Peripheral Neuropathy:
http://neurotalk.psychcentral.com/forum20.html

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Thanks for the welcome. I'll check that link out. Yes I have been through a lot and I don't think it'll ever be truly done cause I've got lifetime illnesses that will always put me at risk for things but for now at least, I'm doing fairly well. I haven't been admitted to the hospital in a year and a half thank goodness.

It's nice to find someplace where I have things in common with people. I am on other forums for my other illnesses as well, feels like I'm a multiple medical mystery. lol